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Translation Of Medical Terms Needed
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3 posts in this topic

Hello all.  I've been gluten free for 4 years and 4 month after being undiagnosed for at least 25 years. I still have a bunch of lingering symptoms however, even though my blood test confirms that I am indeed gluten free.  I asked my GP if I could get a repeat endoscopy to see if that could explain part of my problems.  I had one recently and I got a copy of the lab report when I saw him today.  He didn't really explain it, just said I still have villous atrophy.  I'll be going to the gastroenterologist in June so will be able to find out for sure, but until then maybe some of the experts would be able to translate:

 

         minimal focal nonspecific crypt hyperplastic villous atrophy

 

Looking up the words individually isn't helping all that much.  Here's hoping some of the angels on the site can help!!

 

P.S.  My GP who told me I needed to see a psychiatrist a couple of months ago, was much nicer to me now that he knows there is still something wrong...  

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copy and paste the entire thing into google. A bunch of articles come up that should help!

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I work in medical coding so terminology is something I'm good at and I also happen to code pathology reports a lot as well.

 

From what you posted it seems they are using unusual terminology for this sort of biopsy. Essentially, they are trying to say there is a minimal amount of crypt hperplasia and low grade villous atrophy.

 

To break it down further, Villious atrophy is typically seen in celiac disease as well crypt hyperplasia.

 

Villious atrophy is when your villi are blunted or flattened to some degree. Since villi are the things in your intestines that absorb nutrients having them damaged can affect nutrient absorbtion and cause many of the symptoms we celiacs have. Villious atrophy is the most important part of the biopsy findings, if there is none you are much more likely not to have celiac disease (though it is not impossible) and the presence of atrophy in the right grade is a hallmark of Celiac disease. Typically, the pathologist will give your atrophy a Marsh grade of 0-3c (0,1,2,3a,3b. 3c).  Marsh grade 0-1 are unlikely celiac, 2 is inconclusive (depending on your medical history/labs...ect), and 3a or higher is positive diagnosis of celiac.

 

Crypt hpyerplasia is something that goes along with atrophy and helps with the diagnosis and they also will note excess leukocytes. Between atrophy, leukocytes, and crypt hyperlasia a positive celiac diagnosis can be made via biopsy.

 

The part that is curious about what you posted is the note about it being "minimal" "focal" and "non-specific".

 

So, it looks like you have hyperplasia of the crypts and atrophy at minimal level which seems like it would indicate a low marsh grade. Focal and non-specific can mean that there was a very small area of the biopsy that showed hyperplastic crypts and atrophy and that it is not specific enough to diagnose anything with.

 

Essentially, the way I read it, is that you have some hyperlasia of the crypts and some atrophy of the villi but it seems the pathologist may think that they do not see enough to positively diagnose celiac disease. This is just my best guess, it takes a while to get used to how any given pathologist uses terminology and I'm not familiar with your pathologist's way of dictation so I could be wrong. 

The first thing I would do is ask if there were any notes about leukocytes or if a Marsh Grade was given.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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